{"id":1358,"date":"2006-05-18T05:17:00","date_gmt":"2006-05-18T05:17:00","guid":{"rendered":"http:\/\/susansenator.com\/blog2\/2006\/05\/its-life-stupid\/"},"modified":"2006-05-18T05:17:00","modified_gmt":"2006-05-18T05:17:00","slug":"its-life-stupid","status":"publish","type":"post","link":"https:\/\/susansenator.com\/blog\/2006\/05\/its-life-stupid\/","title":{"rendered":"It’s Life, Stupid"},"content":{"rendered":"

I do not like the concept of recovery from autism. On a bad day, I think that’s because Nat did not recover and I’m jealous. On other days, that’s because I am offended by the concept. I am offended by the deluge, courtesy of Autism Speaks,<\/a> the Schafer Report, and other similar organizations, that portray autism as the worst thing<\/span> that can happen to a child. There is an assumption embedded in everything these people, undoubtedly well-intentioned, present, that autism is nothing but a disgusting, family-wrecking, life-ruining tragedy and that these kids bring only sadness in their current incarnation.<\/p>\n

I understand firsthand how difficult it can be to have a family member with autism<\/a>. I literally wrote the book on living with an autistic child. I have faced years of sadness over what I believe Nat has missed out on, what I have missed out on, what his brothers have missed out on because he is difficult for them to know, how hard the behaviors are, and on and on. I suffered as a young mother trying to understand. I suffer as an older mother worrying about Nat’s independence and future. <\/p>\n

But the older I get, the more my perspective has shifted. For one thing, I now know many autistic people (adults and children). I have had autistic people tell me what things are like for them, the pain and the joy. When you meet adult autistics, it changes you. You realize that there are very different people out there, and that that is okay. You realize that there is loss, but that loss is everywhere. Coping with autism is the first thing many parents have to face, the first among many other things. But autism is not the only “villain” in life. Autism is a stressor, but so are illness, change, jobs, adolescence, divorce. <\/p>\n

It is so difficult, when you are a young parent first dealing with something as blatant and challenging as autism, and others around you are not. It is so difficult not to compare your life with your friend’s, your autistic child with your typically developing child. Society doesn’t help: strangers judge you, identify you as a bad mother when they don’t know better. School systems are not up to speed on autism. There is so little public money around for services that parents have extra work and expenses in helping their children.<\/p>\n

All that is true and really, really hard. Couple that with all the stuff you think your child doesn’t get to have and to be. It is chokingly sad. I know that. I’m the one who cries (still) when Nat listens carefully to the Little Mermaid singing “Part of That World.”<\/p>\n

I still do not believe that we are tragic. My new pain over Max pulling away from me is every bit as horrible and debililitating at times as the autism pain has been. My grief over Ben being excluded from a birthday party hurts just as much, and I have to let that in as much as any autism pain, because my children count equally in my heart. When I confronted the possibility (gone for now) of my mother having cancer, I felt chopped in half with fear.<\/p>\n

When families put all of their emotional eggs into the recovery basket, they end up missing the bigger picture. Forget for a moment the message that their children may pick up from their parents’ constant drive to fix them. Forget the message that the other family members may pick up from maybe not being as important as their autistic sibling. Forget the message that the husband and wife impart to each other when they cry about how awful their life together has become, and can feel nothing else.<\/p>\n

I have no answer for how to feel something else. I lived through that awful splitting, when I could do nothing but cry and Ned wanted no part of it. All I know is that there is often a shift as our children age and we see more who they really are and we are forced to drop our preconceived notions of Hallmark Card living. We finally get it: that this kid is tough to live with, parenting is really hard work, there is no escaping pain. But it is not the end of the world. Happiness still bursts through, that ray of sunlight on the edge of the clouds. <\/p>\n

Life is hard, nature is red in tooth and claw, no one was ever promised a rose garden. My most basic feeling is, let’s stop blaming autism for so much misery in the world and just focus on our kids and how to bring out the best in them — regardless of their wiring.<\/p>\n","protected":false},"excerpt":{"rendered":"

I do not like the concept of recovery from autism. On a bad day, I think that’s because Nat did not recover and I’m jealous. On other days, that’s because I am offended by the concept. I am offended by the deluge, courtesy of Autism Speaks, the Schafer Report, and other similar organizations, that portray […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-1358","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/pSTth-lU","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1358","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/comments?post=1358"}],"version-history":[{"count":0,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1358\/revisions"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=1358"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=1358"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=1358"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}